Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia, their families and carers. As the illness progresses, a person with dementia experiences a gradual lessening of their ability to communicate. They find it more and more difficult to express themselves clearly and to understand what others say.
Some changes in communication
Each person with dementia is unique and difficulties in communicating thoughts and feelings are very individual. There are many causes of dementia, each affecting the brain in different ways.
Some changes you might notice include:-
• Difficulty in finding a word. A related word might be given instead of one they cannot remember
• They may speak fluently, but not make sense
• They may not be able to understand what you are saying or only be able to grasp part of it
• Writing and reading skills may also deteriorate
• They may lose the normal social conventions of conversations and interrupt or ignore a speaker, or fail to respond when spoken to
• They may have difficulty expressing emotions appropriately
Where to begin
It is important to check that hearing and eyesight are not impaired. Glasses or a hearing aid may help some people. Check that hearing aids are functioning correctly and glasses are cleaned regularly.
Communication is made up of three parts:-
• 55% is body language, which is the message we give out by our facial expression, posture and gestures
• 38% is the tone and pitch of our voice
• 7% is the words we use
These statistics highlight the importance of how families and carers present themselves to a person with dementia. Negative body language such as sighs and raised eyebrows can be easily picked up.
What to try
People retain their feelings and emotions even though they may not understand what is being said, so it is important to always maintain their dignity and self esteem. Be flexible and always allow plenty of time for a response. Where appropriate, use touch to keep the person's attention and to communicate feelings of warmth and affection.
Ways of talking
• Remain calm and talk in a gentle, matter of fact way, always showing respect
• Keep sentences short and simple, focusing on one idea at a time
• Always allow plenty of time for what you have said to be understood
• It can be helpful to use orienting names whenever you can, such as 'Your son Jack'
• You may need to use hand gestures and facial expressions to make yourself understood
• Pointing or demonstrating can help
• Touching and holding their hand may help keep their attention and show that you care
• A warm smile and shared laughter can often communicate more than words can
The right environment
• Try to avoid competing noises such as TV or radio
• If you stay still while talking you will be easier to follow, especially if you stay in the person's line of vision
• Maintain regular routines to help minimize confusion and assist communication
• It is much less confusing if everyone uses the same approach. Repeating the message in exactly the same way is important for all the family and all carers
What NOT to do:-
• Don't argue. It will only make the situation worse
• Don't order the person around
• Don't tell them what they can't do. Instead state what they can do
• Don't be condescending. A condescending tone of voice can be picked up, even if the words are not understood
• Don't ask a lot of direct questions that rely on a good memory
• Don't talk about people in front of them as if they are not there
Tips from a person with dementia
Christine Bryden was diagnosed with dementia at age 46, and has shared a number of her insights about ways that families and friends can help a person with dementia. Christine is also the author of a number of publications, including 'Who Will I Be When I Die?', the first book written by an Australian person living with dementia.
Christine provides these tips for communicating with a person with dementia:-
• Give us time to speak, wait for us to search around that untidy heap on the floor of the brain for the word we want to use. Try not to finish our sentences. Just listen, and don't let us feel embarrassed if we lose the thread of what we say
• Don't rush us into something because we can't think or speak fast enough to let you know whether we agree. Try to give us time to respond - to let you know whether we really want to do it
• When you want to talk to us, think of some way to do this without questions that can alarm us or make us feel uncomfortable. If we have forgotten something special that happened recently, don't assume it wasn't special for us too. Just give us a gentle prompt - we may just be momentarily blank
• Don't try too hard though to help us remember something that just happened. If it never registered we are never going to be able to recall it
• Avoid background noise if you can. If the TV is on, mute it first
• If children are underfoot remember we will get tired very easily and find it very hard to concentrate on talking and listening as well. Maybe one child at a time and without background noise would be best
• Maybe ear plugs for a visit to shopping centres, or other noisy places
Communicating effectively with a person who has dementia becomes an increasing challenge as the person progressively loses their memory and their ability to organise and express their thoughts. For many, the loss of recent memory means that the past begins to merge with the present resulting in additional difficulties for family and carers.
A number of alternative communication approaches have been developed which attempt to provide the trust and support so necessary to a person's wellbeing. Many family members and carers will be instinctively using some of them without realising their formal names.
Validation Therapy advocates that, rather than trying to bring the person with dementia back to our reality, it is more positive to enter their reality. In this way empathy is developed with the person, building trust and a sense of security. This in turn reduces anxiety. Many families and carers report increased benefits for themselves, as well as for the person with dementia, from a reduced number of conflicts and a less stressful environment.
Validation Therapy is based on the idea that once the person has experienced severe short term memory loss and can no longer employ intellectual thinking or make sense of the present, he or she is likely to go back to the past. This may be in order to resolve unfinished conflicts, relive past experiences or to retreat from the present over which they have little control. Some people will go in and out of the present.
Some family members and carers express concern that validation involves lying to the person with dementia about reality. However a more accurate description is that it avoids challenging their reality.
For instance, if a person with dementia believes that she is waiting for her children, all now middle aged, to return from school, family members and carers who use validation would not argue the point or expect their relative to have insight into their behaviour. They would not correct their beliefs. Rather, the validating approach proposes acknowledging and empathising with the feelings behind the behaviour being expressed. In this way the person's dignity and self-esteem are maintained.
Activities that involve music are another effective way of communicating with a person who has dementia. Often when other skills have gone, the person can still enjoy old familiar songs and tunes. A certain piece of music can unlock memories and feelings. It is important to be prepared to respond to the release of these feelings.
The big advantage of music is that it does not require a long attention span and it can also be a valuable trigger for reminiscing. Knowing a person's musical likes and dislikes is vital for this to be a successful approach. Music can be used as a formal therapy or simply for enjoyment. It can also help in the management of difficult behaviour. Music therapists have extensive training in the use of music with people with dementia and can address some very complex behaviour.
Reminiscence is a way of reviewing past events that is usually a very positive and rewarding activity. Even if the person with dementia cannot participate verbally it can still give them pleasure to be involved in reflections on their past. It can also be a means of distraction if the person becomes upset. While reviewing past events can provide a sense of peace and happiness, it can also stir up painful and sad memories. It is important to be sensitive to the person's reactions if this happens. If their distress seems overwhelming then it is better to use another form of distraction to reduce anxiety.
This Is Your Life book
Making a chronological history of the person with dementia can help with reminiscence and provides information for people who may interact with them. A 'This Is Your Life' book is a visual diary. Similar to a family photo album, it can also include letters, postcards, certificates and other memorabilia. A large photo album with plastic protective sheets over each page will last indefinitely and can withstand a lot of use.
Each photo needs to be labelled to avoid putting the person with dementia on the spot with questions such as 'Who is that?' It is best to limit the information on each page to one topic, and to have a maximum of two or three items on each page.
The following list may help in getting a book started:-
• Full name and preferred name
• Place and date of birth
• Photographs and name of mother, father, brothers and sisters
• Photographs of partner and wedding day
• Photographs, names and birthdays of children and grandchildren
• Photographs of family friends, relatives and pets
• Places lived in
• School days
• Occupation and war service
• Hobbies and interests
• Favourite music
• Holiday snapshots and postcards
• Letters, certificates, diagram of family tree and short stories about specific incidents
This book can provide a great deal of pleasure and pride for a person who may be feeling increasingly bewildered in the present.
Help and Support
In Jersey there are specialists in speech and language therapy who are based at the Eva Wilson Centre, Overdale, Westmount Road, St. Helier, Jersey JE2 4NX
The Speech and Language Therapy Department has an open referral system, therefore if carers would like to refer a person living with dementia they should phone 01534 443030. They will need to give the person's name and address and date of birth and a brief summary of their concerns.